Welcome to the start of my first blog EVER! I plan on learning as I go, so while this may not be the most sophisticated blog, it is a work in progress, just like me!
Before I get into my story, I have to share this. I have been married to a wonderful man since September 26, 2015, so we are NEWLY WEDS!!! The picture below is one of the pictures of us on our wedding day, and I am sure that through this blog you will get the chance to eventually meet all of the important people in my life, but he is the one who is going through this with me 24 hours a day 7 days a week right now. He is my supporter, my love, my husband, my future, and the man of my dreams.
So, now that introductions are out of the way, and you know me a little better, here is my story.
At 26 years old I had a back injury, which ended in 2 microdecompression surgeries and one double lumbar spinal fusion of L4-S1. Forward 5 years later and at 31 I had a double cervical anterior spinal fusion of C4-C6. In July 2014 Jason and I move to Pensacola, FL for a chance to experience beach life, and like most people I with my history of constant infections like bronchitis, back and neck problems, I got a primary care physician by September of that year.
During September I got horrible bronchitis, again, and went and saw my primary care physician. During that appointment I let her know that my lower back pain was getting worse so she requested an X-Ray to check my previous surgery sight to make sure that my hardware didn't move. It was determined from those X-Rays everything was fine, but I needed to see a pain management doctor. Long story short, and another neck surgery later, I was sent to a rheumatologist to help me figure out why I was still experience bone pain in my back, my legs, my arms, and why my joints hurt.
The rheumatologist was so great, and did a thorough exam, she said that she thought I had fibromyalgia, but to be safe she wanted to get a blood test done to be on the safe side and make sure it wasn't Lupus or Rheumatoid Arthritis.
It was the best time waiting I had ever experienced. Usually waiting for blood results for diseases that affect your life so drastically you aren't able to focus on anything else, but luckily for me I had something extremely important to focus on, our wedding! Jason and I became man and wife on September 26th, 2015 and it was the best day of my life so far. The most important people in my life, (minus my brother, because he was blessed with a GREAT opportunity he couldn't pass up) were there, and it was beautiful, and I felt beautiful, and there was so much love and joy everywhere.
The Tuesday we came back from our honeymoon in Disney World, I had an appointment with my rheumatologist to get my results. That's when things changed. She told me I didn't have Lupus or RA, but I was showing an M-spike in my protein, which meant I have monoclonal gammapathy. What? What the heck is that? Yeah, that was my reaction. She explained to me that it meant my blood was producing a kind of mutant protein. She said that she highly doubted I had multiple myeloma, but there were other blood tests I could get to make sure, so she requested another blood test that would test the heavy chains in plasma. That test came back showing that I had high IgA, and based on that result she referred me to a hematologist/oncologist.
I meant my hematologist/oncologist on November 4, 2015. It was determined that due to my high IgA level, and my age, and that Jason and I had just got married, that I would have a bone marrow biopsy along with completing a 24 hour urine collection, which let me tell you the joy in that.....just kidding, that was of course gross because it has to stay cold the entire time I was collecting it. Anyways, On November 11th I went in for my bone marrow biopsy, which really was not that bad pain wise, but by now I was exhausted, still in pain and was feeling weaker daily.
Finally Monday, November 16th at 9:00am I got a missed call. I called the phone number back and it was my hematologist/oncologist office saying that my doctor wanted to speak to me. My doctor got on the line and told me, "April we already got your bone marrow biopsy results back and there are a lot more plasma cells than we were anticipating, so we need you do complete a bone survey and schedule an appointment to meet with me soon after". So, I went in for my bone survey that day and was scheduled to meet with my hematologist/ oncologist the following Wednesday.
This are where the daily updates start. Everyday there will be an update, some short, some long, but worth the time to read, learn, and see how the changes I am making in my life, including treatment are affecting me.
November 17, 2015
So tonight there has been some reflection and deflection. I have reflected about my past, and deflected the possible outcomes of tomorrow. It is now time for me to rest my weary head, but first a
chance to project what my future can be. Regardless of the diagnosis I face tomorrow I have the opportunity for greatness. I have been through so much already that I know nothing can break me. I was put here for greatness, I was put here for more than what happens to me, I was put here to happen to the world. I'm 33 waiting for a doctors appointment tomorrow that may tell me I am 1% of 1%. If that happens then I will face it head on, with my husband, family and friends, take the path God has chosen for me, live through it, learn from it, and prosper because of it.
Everyday I will have a reflection from here through my journey of either cancer, a complete lifestyle change, or both. I will say what I am grateful for everyday in that reflection. On this night, the night before the rest of my life, I am grateful that I was able to make dinner for my husband. Today I am grateful to know my worth, my strength, and my aptitude. Today I am grateful for being cancer free, and while this may be my last day to say I have never had cancer, it won't be the last day that I say I am cancer free.
November 18, 2015
Today is the first day of the rest of my life. Today is the first day that I can not say I have never had cancer, but I have hope. Stage 1 Multiple Myeloma, so young for this diagnosis that my hematologist/oncologist, and his nurse didn't know that in order for me to get one of my medications I would need to submit to a pregnancy test, so tomorrow I will be going back to take care of that. I have no idea what the name of the medications are that I am going to be given because, to be honest, I am too exhausted right now to go get my paperwork I was given that says the name, but I will update you all with that tomorrow, 2 pills though, 2 pills for now and eventually a bone marrow transplant, but he said we have time for that and it can wait a while, which is awesome! I think that one big lesson I have already learned and that I will remind everyone all the time is ADVOCATE FOR YOUR OWN HEALTH! If you feel something is off with your body and something is not right, keep looking for a doctor who is willing to help you and if they don't respect your life, health, and humanity and blow you off, keep looking for a doctor who will go above and beyond to get to the bottom of what is going on! Advocate for your health because if it doesn't start with you, no one else will advocate for your health.
Today I am grateful for having so many amazing people in my life, husband, family, friends, co-workers, people who have shown their support, are praying, and have sent kind words of inspiration to me. It truly is heart warming to feel the love and support, even though a majority of those people are half way across the country from us right now (as our family and friends mostly live in Kansas City). I am also grateful for modern medicine, it is what gave me the opportunity to be 33 and only at stage 1 instead of 40 and stage 3, that is a blessing and I am truly grateful for that. Lastly, for tonight I am grateful for the new lifestyle that I am learning about, and that slowly Jason and I will embark on to track what kind of changes it can make in me mentally, physically, and what changes it makes in my cancer. So please, be ready for updates, pictures, videos, and so much more!
1% of 1% because of diagnosis age......know your body and advocate for your health to have more of a fighting chance!!!
Related Links:
Multiple Myeloma Research Foundation
http://www.themmrf.org/
International Myeloma Foundation
https://myeloma.org/Main.action
Before I turn out the lights and lay down to read, because lets face it, I'm not sleeping much lately, even though I am exhausted, i wanted to give today's update. So, speaking of being exhausted, when I say exhausted it doesn't mean exhausted like take a nap, I mean exhausted in a different way that I can't explain. Anyways, today I woke up with a text from Jason that said "Babe, today is not the first day, just a new day, and I love you very much. Have a great day". This made me think, that he was right, it is a new day. A new day to make it a great day, with that being said, I am grateful for the amazing support, love, and prayer that I am still getting from him, my family, my friends, and even strangers. I spoke with Kerry, someone who works for KU Med clinical trials. She was so nice, uplifting, knowledgeable, and helpful. It made me believe in people who know how to treat a stranger, show empathy to a stranger, and just give understanding. I am grateful for places like KU Med, where technology and science is being developed, and research is being done to help further knowledge into different types of illnesses. I am grateful and thankful for my Mom, who is not only my Mom, but also my best friend. And on a lighter note I am grateful for little special moments where I know my prayers were heard. It's so funny how not every prayer may be answered, but others are. It truly makes me believe that everything happens for a reason, maybe this is my reason.....to use this forum to help others.
